JEFFERSON — Although the chatter in the Jefferson High School cafeteria was deafening, three boys remained silent and wheelchair bound.
Blake Hinkle, 11th grade, Colton Hinkle, and their friend, Brandon Nash, both 10th graders, portrayed the devastating effects of amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, through the use of wheelchairs and adaptive communication devices to raise awareness and monetary donations for the ALS Association Northern Ohio Chapter.
Blake and Colton Hinkle’s father, Vance, died on Jan. 24 from ALS, a year after his diagnoses. He was 50and is survived by his wife, Wendy and five children.
The Hinkle brothers and Nash titled their event as "Eight hours with ALS” and kept silent all day as a symbol of the disease that robbed Vance Hinkle’s ability to speak.
“I was sitting in my service learning class and my teacher, said we should do something radical to raise awareness and funding,” Blake Hinkle typed out on the “Dynowrite,” a communication device provided by the ALS Association Northern Ohio Chapter. “The day after my dad died I was at a friend’s house and we thought of this idea, ‘Eight hours with ALS,’ to raise awareness.”
ALS is a fatal neurodegenerative disorder that causes progressive muscle weakness and attacks nerve cells and pathways in the brain and spinal cord. Over time, persons with ALS become completely paralyzed, leaving them unable to move, speak and breath. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone is lost to ALS. At any point in time in northern Ohio alone, between 400 and 500 individuals are battling this disease. Although the life expectancy is generally two to five years, advancements in research and clinical management offer new hope, according to a fact sheet from the ALS Association Northern Ohio Chapter.
“Most people are not aware of how common and how deadly ALS is. It hit my family by surprise and I had no idea what it was when it happened, so I thought it would be important to show people how horrible this disease is; I just hope a cure can be found so lives and families can be saved,” Colton Hinkle typed on the Dynowrite.
The ALS Association Northern Ohio Chapter had a display set up in the cafeteria and gave away wrist bands, T-shirts and information for students to take home.
“Blake and Colton’s dad’s disease progressed so fast that we weren’t able to stay ahead of it. He only got his communication device, that he could operated with his eye movements, only two weeks before he died,” said Lisa Bruening, program services coordinator for the ALS Association Northern Ohio Chapter. “If more people affected by this disease knew about our chapter we could help more families.”
The chapter provides individual support, home visits, a medical equipment loan closet, communication devices and assistive technology loan closet, support groups, advocacy, research, respite and more.
People interested in making a monetary donation to the ALS Association Northern Ohio Chapter in response to the Hinkle brother’s fund raiser need to write “Eight hours with ALS” in the memo line. For more information look up www.alsaohio.org.
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Eight hours with ALS
Jefferson students raise awareness of disease
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